The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question

Nobody is normal.
Everyone is unique.

That said, long term illness changes a person; it changes your mind, your emotions, your perspective, your way of thinking… to say nothing of your body.

And the places in your mind that change can be impossible to perceive what is caused by the physical (hey come on, LITERAL viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me even with the deepest introspection lines are blurry).
So when you are in this bubble of misery and feeling desperate; many of us reach that crossroad decision of whether to reach out publicly or not. Now some do so all the time, and some do so seldomly. I want to share with you, the healthy person, the “normal” person, what goes on in our heads and where the need to reach out comes from. Because to you seeing our (sometimes frequent) posts regarding how we are feeling physically and mentally can come off as….

Desperate

Attention-getting

Overly dramatic

Whiny

Ungrateful

Emotionally unstable

Lacking faith

Hypochondriac

Lacking strength

Or “_____” fill in the blank
And honestly maybe some chronic illness sufferers are. BUT, I am asking you to consider grace, and here is why.

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You DO stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, your life may not be perfect or exciting, but it is full.

One day your body starts to betray you. Suddenly all the normal daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years.

You start sleeping a LOT more, so much more you start to feel guilt over your laziness. Even after a full night sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago.
Oh and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain.
Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bed time and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep….Now it feels like that ALL the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you feel dumb as you can’t seem to formulate articulate conversation.
As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy.
At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!”

… you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…. your friends start to drop away, they check in on you less and less, they stop inviting you to things because they know you will just say “no”.

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.
Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You feel a little “crazy” and desperate and sad and lonely. Since you don’t see people in person so much anymore you reach out to your friends online; both your real-world friends and your friends who you have now met in your chronic illness forums and such.
So I am speaking to you; “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention”, talking about what they are going through very publicly (sometimes) going into TMI territory…. know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were.
They post because:
They want fellowship,

They want friendship,

They want to both hear and be heard,

They need a sounding block,

They want to feel normal,

They don’t want to disappear and be forgotten

They want to have a glimpse of normalcy and online may be all they have

They don’t see people much face-to-face so “face”-book is their life.
Hear me now as I write this for my sick brothers and sisters!

Everyone needs people! When you are sick and isolated online is your people!

We are not grand-standers or attention getters (at least not most of us) we are people just like you who have had our lives changed and shaped by our illness and our circumstances. All we want is to be normal and healthy. We covet the little things that most people take for granted; even just taking a walk on a sunny day.
One more thing I want you to know; worry about the chronically ill people who don’t post and instead stay quiet. They are experiencing everything the communicators are, they are just internalizing their pain versus reaching out.

It is: Having an outlet, versus internalizing everything

Isolation, versus reaching out

Honesty, versus putting on a happy face

I have seen too many of the “quiet one’s” obituaries online, (self inflicted.)
Please also know the anxiety we go through on what to post and what not to post.

It is SO hard to judge because (especially) on a bad day our perspectives are askew… and the reactions we get from people also vary greatly.:

You get the positive feedback from the chronic illness community;

“thank you so much for sharing, I am not alone”.

“so glad to hear another person’s perspective”.

“Thank you for being honest and blazing a trail for others that will come behind you.”

This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of suffering.

But, you also get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you….
In closing; why am I posting this? I will tell you it’s not for attention or sympathy. I am giving voice to the silent suffering ones. I am advocating for those whose families don’t believe them. I am opening a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member.

This seems like a good day to do this, Christmas Eve when hearts should be open, love should abound, peace and charity reign over all else 💚

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53 thoughts on “The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question”

I believe you. I find that closed forums are always the safest for the more tender material but should never be a replacement at some point for human sharing, face-to-face. I benefit from both and have even paid for the latter when necessary. Thank you for sharing your heart. Many, like me, will relate! So how about that prayer date? :J

So much of this parallels my own experience, and is partially why I havent been posting much. I’m torn between appearing as a strong RN and being completely honest about how my new role impacts my health and journey with chronic Lyme — a disease not everyone even believes exists.

thank you for your article.. our family has a daughter that NOW we know has lyme for many many years and has just recently reared its head and been recognized.. it pains me that yes, all those years of myself and her siblings listening to her complain about one affliction after another.. yet all the tests were then negative.. that indeed she REALLY did suffer.. i wish there were a hundred million “sorries” we could bestow on her.. when she has beaten this thing, then the healing between all of us will begin.. thanks again

I am happy to see how sorry you are. Please do not wait to mend fences because treatment can possibly take years, as many chronically ill Lyme patients are finding. I’m pleading with you to be there for her and most importantly, BELIEVE her. There’s nothing more important (and will help mend your fences) to validate how she is feeling. Most Lyme patients have NO validation from family or friends. Isolation is a killer (literately).
Yes. I have Chronic Lyme. I’ve been in treatment since November 2014. I’m slowly getting better but still disabled, as I no longer feel close to death from this disease. And worst of all, I’m NEVER validated by family or former friends. Reread this article. It’s my life as well as thousands of others.
Mend your fences NOW, please.

Thank you for sharing! My youngest sister
Has battled lung cancer( not a smoker) and Ovarian Cancer….We were scared because she
Had all of the Lyme symptoms. She was stubborn.
A single Mom, I think she was scared a new cancer had popped up! Avoided doctors. Finally
Went…Sure enough the poor thing is battling Lyme Disease! I have progressive MS and I share
My highs and lows. But I keep my page inspirational, informational, funny, honest & open
To any disease. People like my sister don’t talk about her illness. Me, on the other hand I do
Share my journey. It’s not meant for pity. It’s done
To help others no they are not alone! 💗

truly beautiful, so real, heartbreaking and keep sharing your story – people need to know and start to understand the suffering, that is how they can learn about this horrendous disease as well as what you are going through personally – you are not alone, there are legions you are giving voice and courage to. thank you!

Dear Jennifer,
I saw this posted on Facebook and it immediately spoke to my heart. I am ten months into Lyme treatments and it has been a real struggle. Your words are like a mirror of what I feel. Thank you so much for sharing your story.
Valerie

Valerie I’m so sorry that you have to go through this, there are no words to describe the difficulty of experiencing chronic Lyme disease. I wish you all the best and I am so glad that my blog was able to help

Psalm 73:26 (ESV) My flesh and my heart may fail,
but God is the strength of my heart and my portion forever.

Stumbled across your blog on FB, I have only experienced a small glimpse of the heart ache (physical and emotional) you describe, but I know this verse has encouraged me at times. 🙂 Thanks for sharing, praying for you today.

My chronic “disease” is living with the after effects of Stage III Colon Cancer treatments — 2 major abdominal surgeries, 2 rounds of chemotherapy and 1 round of very intense radiation therapy.

What struck me on your post was the comment about things that your body used to do so easily now you struggle to do or can’t do at all. That’s me after cancer treatments. I want so desperately to get my health back but I know that it will never be back to the way it was before all this.

The most frustrating thing from my compromised state of health is the effect it has had on my personality. I used to be fun loving, kidding around with my friends and family, always up for the next adventure in life. Now I see myself gradually becoming a shut in and a recluse, losing interest in going out and socializing.

My overall mood is just very different than it was before cancer. I feel like I walk around with a permanent look of sadness on my face that is very off putting to other people — no one wants to be around someone who is a downer all the time, yet that is what I have become.

I am still trying to regain some of my health. I am trying Acupuncture and so far the results are mixed. But….I am going to stick with it a while longer because I have tried everything conventional medicine has to offer with no consistent beneficial results.

Oh my goodness, you have been through so much. I am so sorry. This is indeed relevant to your health battle as well, it is true that these things change “you”.
I know I have written other posts as well about mental and emotional changes although I cannot recall titles right now.
But I truly hope these posts can help others know that they are not alone and help their friends and loved ones understand at least somewhat of what they are going through.

Excellent post. You are an exceptional writer. I shared this on my FB page and it got a huge response. I wanted to tell you. I just started a WordPress account so that I could tell you. Please look me up on FB and check out the comments if youd like. Thank you.

Thank you so very very much for giving voice to our inner life. I had carbon monoxide poisoning, with other chemical exposures back in 2003. We have many similar health issues as folks with other chronic illnesses — whether mold illness, Lyme, chronic fatigue, etc. Wishing you and everyone else the very best along our healing journeys.

Thank you, it was a great description of what Im going through, for 11 months now… slowly getting better since I moved 3 months ago, stopped eating sugar, and started taking an anti-fungal oil called Black Seed…
My extreme chronic mold sickness was so bad the first 8 months, that I wanted to just die, and was ready, because it was that bad… total and complete misery, surprised im still here…
My wife is probably the only person that understands anymore, the rest of the family is fake, and wont even visit… you learn alot about family when your sick… anyways, thanks for the story, it made me feel so much better, knowing im not alone… thank you!

Hi Joel! Saw you over on Cynthia’s mold page on Facebook. Hope your healing is going well. I have had same problems with friends and family. Scary how few folks will really stick with you. Hang in there..

It brought me to tears as it puts into words so perfectly what I went through, before I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. The slow decline, the increasing dependence in caffeine, the social withdrawal, the inexplicable but constant exhaustion.

I immediately shared it to try and help others understand what happened to me and also to offer empathy to other friends with chronic illness.

Thank you for taking the time and investing the effort to write this. I hope you have many, many good days coming your way.

I hope the best for you as well. I am so sorry that you have had to go through so much…
I can only say thank you for the kind words, and one of the fruits of having been through so much difficulty is to do my best to share in order to help others

Thank you so much for your post, I contemplate every post I make when it comes to my MS because of the same reasons you listed. I was diagnosed 9 months ago now but it feels like years already as I have had to stop most everything I loved to do and do often back before this came about, everything you wrote is exactly what I experience along with the horrible memory issues that I now have to deal with as well at 40 years old. Thank you again and I definitely will be sharing this to those I know need to read this but probably won’t.

I am so glad you posted this!! Thank you for sharing! Are you on twitter? I almost feel like I need to have separate accounts – one that’s related to God/missions/areas of professional interest and one where I can show the real me that’s struggling. I’m about to try a new specialist soon to see if that will help me get better…

Really well-written post, but I was disappointed to find your list of negative ways that posts come off (i.e. attention-getting, desperate, whiny, hypochondriac, etc) contains a very real medical issue. Bipolar disorder is a serious illness, and lots of the people reading this can identify with almost everything (else) you have written. It seems like that word gets misused a lot. It’s not a synonym for moody. It’s certainly not a choice.

Thank you for your bravery in being a voice for those of us who have lost ours. Your article is eloquently written and describes perfectly how isolating being in chronic pain, for whatever reason, can be.

Crystal I am sorry you are suffering in silence but I completely understand the reasoning and there is nothing wrong with that. Hopefully myself and other bloggers can help give you the voice so that people in your life understand what you’re going through

This is the most well written article I have ever read and believe me, I have read everything I can get my hands on. I have MS, fibromyalgia and more. Thank you for so perfectly putting into words my feelings. I hope many will read it and better understand. Thank you!

I don’t even want to be on FB anymore. I get tired of everyone knowing what I should do. I should stop eating one thing, or eat more of another; I should take that supplement or do this exercise; I should see this doctor or read that book. I don’t want advice. I just want someone to recognize how miserable I am and just pat my hand and say, “poor dear,’ then write about normal life, etc. I have no friends where we live, so I don’t even have someone that will come over and keep me company or go to the movies with. If it weren’t for my husband, I honestly would have no reason to live. No one much would miss me if I weren’t around. I wouldn’t hurt myself, so don’t worry, certainly no one would care except the one person I love and I wouldn’t hurt him. So, I keep on plugging along. I am tired of trying to explain myself to people. I am tired, period.

A Healthier me

Bio

My name is Jennifer, I have spent the last decade or so battling various health issues from gastrointestinal... to fibromyalgia... to adrenal trouble... to chronic edema..and it has taken this long to find the culprit to be Lyme disease. I am at this time 8 months into treatment, and looking at approximately another year and a half. I continue to struggle, and for every answer I find I still have another question.
From around 1990-1995 my family lived in a very toxic house and property (we did not know this when we moved in). It took years to uncover the various problems, but in brief the house was laden with 13 different kinds of mold including black mold. We were also surrounded by swamp and stagnant water. Our water source was a well, and although we eventually got a good filtration system we found out that there had been heavy metals and chemicals buried in the ground. We were all very sick for many years dealing with everything from chronic sinus infections and lung issues, to chronic fatigue. My mother developed cancer, but thankfully survived.
Now all these years later we still feel the effects, we are being treated for mold biotoxic illness ( www.survivingmold.com ), and my sister and I are battling Lyme disease and heavy metal toxins, along with other subsidiary illnesses including candida, Leaky Gut, SIBO, adrenal/thyroid/pituitary and (fill in gland or hormone here). It is a long journey, but I am blogging to connect with others, share my story, raise Lyme awareness, and hopefully share my faith.